Exclusive: NHS cost threshold has not been raised by National Institute for Health and Care Excellence since 2004
People with motor neurone disease have spoken of their devastation at a likely loss of access to a life-extending drug due to an NHS cost threshold that has not been raised since 2004.
Tofersen has slowed the progress of the illness in trials but the chances of the drug being recommended for use in England and Wales are said to be slim.
Continue reading...A neurology professor wants MND to be listed as a notifiable disease to help investigate suspected environmental links
A top neurologist has called on the New South Wales government to list motor neurone disease (MND) as a notifiable disease amid suspicions a cluster of diagnoses in the state could be linked to something in the environment.
Prof Dominic Rowe, a neurologist at Macquarie University, has treated 889 MND patients – many from the NSW irrigation town of Griffith – in the past decade.
Continue reading...A year after her husband Joe Hammond’s death from motor neurone disease, his widow reflects on grief, parenting through loss, and survival
How do you decide upon a day to die? For my husband Joe and me, that meant finding out when the doctors we needed were available, then we took note of our two sons’ school holidays and, finally, we looked at the carer rota for that month. Who could we trust with Joe’s death as much as we had trusted them with his life?
The next step was a meeting with the relevant doctors; what incredible women they had been throughout our whole, surreal journey. They asked us how we imagined the process might unfold, during which Joe would receive a huge amount of morphine to sedate him enough that his ventilator could be removed. We were bemused. What were the options? Apparently, some people choose to watch television and the programme of choice is Countdown. This gave Joe and me the giggles. We said we thought we’d manage without more conundrums than we already had.
Continue reading...